A benefit designed to support disabled people is making their health worse and leaving them isolated, according to new research from over 80 organisations.

In a survey of over 1700 people with long-term conditions including Parkinson’s, multiple sclerosis, epilepsy and mental health problems, more than three quarters (79%) of respondents said their assessment for Personal Independence Payment (PIP) had made their health worse due to stress and anxiety.

It is the first time that PIP, which is designed to help people with extra costs caused by long term ill-health or disability and replaces Disability Living Allowance (DLA), has been evaluated in this way.

The organisations that make up the Disability Benefits Consortium (DBC) warn that although PIP is a lifeline for disabled people when they can access it, the findings provide clear evidence that in too many cases, the assessment process is failing people at every turn and having a devastating impact on their health.

As part of their report ‘Supporting Those Who Need It Most?‘ launched today, the DBC surveyed more than 1,700 people and found that applicants are facing unnecessary barriers to accessing the support they need, including:

Almost three quarters (71%) of respondents found the PIP application form ‘hard’ or ‘very hard’ and 11% of respondents were unable to complete it at all

Over half (58%) of people said that assessors did not understand their condition

Two thirds (64%) of people who saw their claim form felt it ‘badly reflected’ the answers they had given in their face-to-face assessment

As a result of this flawed assessment process, people are losing out on vital support with half (50%) of respondents saying they were receiving less money under PIP than they were previously entitled to under DLA, or they had lost their award completely.

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The report warns of the devastating consequences this is having, including people:

becoming more isolated (40%)

struggling to pay for food, rent and bills (35%)

not able to get to medical appointments (26%)

The report also shows that the number of decisions being overturned at appeal is increasing. In 2013/14, 26 per cent of decisions were changed in favour of the applicant. In the fourth quarter of 2016/17 this had increased to 64 per cent.

The DBC say this suggests the assessment process is failing to make accurate decisions first time around, leading to further stress for the applicant. In addition, it is estimated people face a 17-week wait for their appeal without access to the financial support they desperately need.

Diane Barrett from Battersea, South London was diagnosed with Parkinson’s in 2008. She was receiving the highest rate of Disability Living Allowance for seven years but after her reassessment for PIP she was told her needs had changed and she lost the £57 a week she was receiving to pay for a mobility car. She had to take her case to a tribunal to get the decision over-turned.

Diane explains: “I was absolutely gobsmacked when the letter came. To be told I had improved when I’m living with a condition that is only going to get worse was horrible.

“Without the allowance I couldn’t have a car which had a massive impact, it totally took my independence and my lifeline away. I find it hard to use buses and have fallen a couple of times when I’ve tried so it was quite scary.

“It also made me realise how bad my Parkinson’s was, going through the process was a constant reminder of my diagnosis. I can normally stay positive but the stress made me worry about the future and I became depressed. This led to lack of sleep and that caused my tremor and stiffness to get worse. I felt very isolated.

“I ended up going to a tribunal and it took just ten minutes for the judge to overturn the decision.

“As soon as it happened, my son and I looked at each-other and cried with relief. I felt that finally someone was listening to me and believing me about how my condition affects me. It had been so stressful and confusing from start to finish, I was glad it was over.

“I wish the government would think more about long-term conditions. People with conditions like Parkinson’s and MS are not going to get better, the system just does not take that into account.”

The DBC is now calling on the government to urgently review PIP and make much-needed improvements including simplified application forms, improved knowledge for assessors and indefinite awards for people with progressive conditions, removing the need for people to constantly be reassessed.

Phil Reynolds, Co-chair of the Disability Benefits Consortium and Senior Policy Adviser at Parkinson’s UK, said: “For the first time, these findings paint the true picture of what it is like to go through the complex assessment process for PIP.

“Shockingly, a small number of people told us the experience of claiming PIP was so distressing that it has caused new conditions to emerge, or even caused suicidal thoughts.

“It is clear that PIP is failing many people from start to finish so it is vital the government work with us to get a grip on PIP and support everyone who needs it, instead of making their health worse.”